So I have had two seperate breast cancer diagnoses since 2009 which has resulted in two seperate mastectomies. I have a gene fault (Li Fraumeni Syndrome) which meant that I should be receiving yearly breast MRI’s but I have been told that I will no longer receive this screening as I no longer have breasts. My concern/worry about this is that everything I read tells you how widely distributed throughout the upper body breast tissue can be and how even having a double mastectomy still leaves you with a 10% risk of developing a breast cancer. Especially knowing I have a gene fault and have had breast cancer twice so young (I’m 33 next week) I am struggling with the doctors decision not to carry on with the annual MRI. Maybe I am just being paranoid but am I?
What screening do other people with a double mastectomy currently have, if any? Does anybody with a gene fault receive any other screening at all? Obviously I am still doing self examination but after what I have been through it just doesn’t feel like its enough if you know what I mean.
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Very interesting question sandra,I asked at bc clinic about a month ago when i was told that after my tattooing at the end of next month they will see me just once a year.I asked what they would do to keep a check on things and they said just an examination.I dont see how they will pick up anything just from this.I wondered if we can demand an mri or ct scan,i will follow this post with interest.On a lighter note,after having had a ct scan 5 mths ago and told I had small liver lesions too small to be of significance,i had a repeat scan yesterday after I requested one and the result is no change,which points to the lesions being benign,great news.(i work at the hospital which is why i got the result so quickly but why do we have to wait so long for the results when they are known so quickly?)
Hi Sandra & Di,
I understand how worrying it is when ypu are more or less discharged from any screening. Maybe if you make a fuss or talk to your bc nurse, you can be checked more precisely. I had a mastectomy in 2003 and another in 2010 followed by chemo each time. I still see my oncologist every 3 months for a check up and a blood test, and I have yearly cat scan from neck to pelvis. They did find a “lesion” on my liver in 2010 that was not there before and then they did a MRI, but reckoned it was a benign cyste. I am not sure how long this will go on for, but it is reassuring that they are checking up on me. I have the brca 1 mutation.
good luck to you both and may you stay NED for many years to come
Thanks for your replies.
Maria: That is very interesting to hear. It’s shameful how some doctors offer so much and then others (like mine) offer next to nothing. Would you mind letting me know which hospital or trust you are under please?
i think they should do a yearly scan even if all seems ok,if only to put our minds at rest.im going to request a scan on my yearly checkup